JMIR Publications

ABSTRACT

Background:

International advances in information communication, eHealth and other digital health technologies have led to significant expansions in the collection and analysis of personal health data. However, following a series of high-profile data sharing scandals and emergence of COVID-19, critical exploration of public attitudes and perceptions towards sharing personal health data remains limited, particularly for third party or secondary uses.

Objective:

The aim of this review is to therefore explore factors that affect public attitudes towards sharing personal health data for third-party or secondary uses.

Methods:

A systematic search of six databases [MEDLINE, EMBASE, PsycINFO, CINAHL, Scopus and SocINDEX] was conducted with review findings analysed using inductive-thematic analysis and synthesised using a narrative approach.

Results:

Of the 13,949 articles identified, 135 were included. The factor most commonly identified as a barrier to data sharing from a public perspective includes data privacy, security and management concerns. Other factors found to influence public willingness to share personal health data include: the type of data being collected (i.e., perceived sensitivity); the type of user requesting their data to be shared, including their perceived motivation, profit prioritisation and ability to directly impact patient care; trust in the data user and associated processes often established through individual choice and control over what data is shared with who, when and how long for, supported by appropriate models of dynamic consent; presence of a feedback loop; and clearly articulated benefits/issue relevance including valued incentivisations and/or compensation at both an individual and collective/societal level.

Conclusions:

There is general, yet conditional public support for sharing personal health data for third party or secondary use. Clarity, transparency, and individual control over who has access to what data, when, and how long for are widely regarded as essential prerequisites for public data sharing support. Individual levels of control and choice need to operate within the auspices of assured data privacy and security processes, underpinned by dynamic and responsive models of consent that prioritise individual and/or collective benefits over and above commercial gain. Failure to understand, design and refine data sharing initiatives in response to changeable patient preferences only seeks to jeopardise to tangible benefits of data sharing practises being fully realised.